Being happy doesnt mean that everything is perfect.

It means that you have decided to look beyond the imperfections...

Wednesday, March 23, 2011

CPEC Update

Its been almost 4 weeks since Ellie started at CPEC. Alot of friends and family have been asking;
"Is Ellie enjoying it?"
"Have you noticed improvements with her?"

To be honest if Ellie could talk, I dont think that Ellie would describe it as enjoyable right now. It is bloody hard!!! Physically hard for Ellie. Mentally and emotionally hard for me.

Yes I can see how that in the long term, what we are doing at CPEC will help Ellie, make her stronger, make her understand how to move and use her body and hopefully help her communicate. So yes there are positives, they will come with time.

But for now both Ellie and I come home exhausted. One of the hardest parts is when we are doing something physically hard with Ellie, and she crys. I do try and push her a little bit, as I dont want her to think that if she crys, that immediately we will stop. But.... How hard do you push her? As a mother it is very hard to push your child to benefit them, when they are crying...

However that aside... the therapists are lovely and unbelievably helpful and the other mums so lovely... I get a real buzz when we all celebrate a childs success, no matter how small.

Here are some photos of Ellie enjoying play time & lunch at CPEC.

Here are some other new pics of Ellie... ENJOY!!

Friday, March 11, 2011

Eye surgery

Yesterday we had an appointment with Ellies eye surgeon. This appointment was booked as the specialist that makes Ellies glass eye, doesnt think that we could put a bigger glass eye in Ellies right eye socket. Even though its been 6 months since her last mould and new glass eye. You just cant put a bigger glass eye in and expect that it will stay in, if we put something in there that is too big, it wont stay in. We need to make room for a bigger glass eye.

Ellies eye surgeon measured both Ellies eyes. Yes, her right eye socket has grown. Considering when she was first born there was virtually no room in her right eye socket. However, the only way that we are really going to get Ellies right eye socket to expand, is if there is something in there expanding it.

At the moment Ellie has a 12mm orbital implant in her right eye socket. This is something that was placed in back in February 2009 and is still in there. Ellie also had a expander put in, November 2009. This stayed in for 4 weeks, and her eye lid was stitched closed.

After our appointment yesterday with Ellies eye surgeon, his plan is to remove the 12mm orbital implant, and put a bigger one in. With the view to also put another self expanding hydrophilic expander in for 4 weeks. The purpose of all this is to help Ellies right eye socket grow.

We are now waiting to hear of a surgery date.

Tuesday, March 8, 2011

Hearing Aid frustrations...

Ellie has new hearing aids. These are more powerfull than her last ones... which in turn will help her hear more. Fantastic I hear you say!!!

Yes the fact that they will help Ellie hear better is great... However apparently more powerfull hearing aids, means that the hearing aids have to be bigger. The bigger hearing aids are not a problem. When you have a child that needs a glass eye, AFO's, leg wraps etc, you get used to all the "extra things" your child needs.

The problem is that bigger hearing aids mean they do not stay totally put behind Ellies ears. As Ellie is still not sitting and mainly on the floor, and does not stop rolling around. This means that the hearing aids can come loose from behind her ears making it easier for her to remove. The solution that we have been given for this is ..... Double sided tape!!! I was horrified when I was told this. I dont mind my daughter having to have a glass eye, hearing aids or AFO's but the thought of having to put double sided tape on behind her ears... I really dont like. Not only does it not pull at her hair, but it looks like it is making her skin dry

The second thing about the new hearing aids is that when Ellie leans on them (which she does alot as she moves around on the floor) they SQEAUL....!! This drives me insane, and I can only imagine that it cant be too nice for Ellie.

I expressed my concern about this to the audiologist, however he stated that as Ellie needed more powerfull hearing aids.... more powerfull means bigger.... Are you serious??!!??!!

What I dont get that in this day and age, with the advancement of technology, that a child as little as Ellie (and Im sure there are smaller kiddies than Ellie that need hearing aids) have to put up with squealing hearing aids and double sided tape....!!

Ok vent over...!! We have a appointment in 3 weeks time, so I am going to give her hearing aids a really good go between now and then... as yes they are making a difference, I do see her respond a bit more.

But I was thinking... the hearing aids are obtained through a government funded business that provide hearing aids free of charge to children and pensioners. Maybe these are the only hearing aids that the goverment will fund?? Maybe there are other smaller hearing aid options out there but not funded by the government as they are to $$$

Hmmm just a thought... Might need to do some research as I am not keen on "double sided" taping Ellie every day

Tuesday, March 1, 2011

The Mother at the Swings - By Vicki Forman

Todays post is a beautiful story that I found on another blog that I follow. It is called
'The Mother at the swings' By Vicki Forman. I absolutely loved this, and felt I had to share it. Enjoy!!!

The Mother at the Swings
by Vicki Forman

It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.

I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.

The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?

She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.

It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.

It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.